Dear Epilepsy, fuck you very much

I normally try to keep quite upbeat when it comes to living with epilepsy. I reflect on how I basically have it very good, how epilepsy doesn’t impact my life too much and how things could be so much worse.

But today…

Today made it very hard to think positively or optimistically about epilepsy in any way.

This morning, while in London City Airport, between (very approximately) 0900 and 1030, I had five (for me) severe seizures. They started with my usual inability to read what was in front of me – in this case, the departures board I was reading, trying to work out just how long my flight to Dublin was delayed.

This spread to the laptop screen in front of me, as I attempted to decipher a client email, which suddenly appeared to be a string of cities. The same cities that had appeared on the departures board. I know I’m having a seizure when the text from one source appears everywhere else I look, like a freaky ghost image.

I closed my eyes and took a deep breath, bracing myself for the inevitable experience to follow. And my brain didn’t let me down.

A feeling of inexplicable dread, rushing thoughts and intense, intense focus on the table in front of me. And then, as if someone flipped a reset button on the back of my head. Nothing. No idea of where I was, why I was sitting there or who the people were around me. I was traveling alone, so to be fair, they were all strangers.

Reality slowly dawned and my memories and awareness returned over the next few minutes. I weighed up my options. I was supposed to be flying to Dublin for two days of client meetings and some coaching sessions. If this was a single seizure, I’d snooze on the plane and then work through the inevitable headache until I could get into bed. I probably have to cancel the client dinner, but no harm done.

Sadly, just as soon as I was able to think clearly – marked by me as being able to read the logos on the planes just outside my window – I had another, stronger seizure. I had to squint through the confusion and gripped onto the table as I started to feel like I was falling. Except I wasn’t. Temporal lobe epilepsy messes with your reality and as my seizures are now limited to the complex-partial type, I don’t fall to the ground and exhibit ‘typical’ symptoms.

In fact, I’ve been around people previously who had no idea I’d even had a seizure. It mostly goes on in my head, with very little difference externally, unless I’m speaking to you. Or you’re speaking to me and I don’t respond. Or I burst into song while trying to speak. That only happened the once, but it was to an audience of about 25 people. So it’s memorable.

I sat there and waited for it to pass. Which it did, eventually. I think it took about 15 minutes before I felt anywhere normal. I then had another, not as strong, but enough that I couldn’t move from my seat. I was now in a lot of pain due to the headache and wanted nothing more than to curl up in a soft, warm bed. I had to abandon the Dublin trip and find my way out of the airport.

In my state of mind, that was harder than you’d expect. I looked distinctly ill – a trip to the bathroom confirmed just how pale and ‘shaky’ I appeared. I had to queue at the information desk to find out just how I could leave the airport. I’d already gone through the utter hell of security and was in the departures area. I’ve never walked away from a flight before, so I’d no idea what to do.

I very quickly explained my situation and a very kind British Airways team member escorted me down to the baggage arrival area via several back doors and stairways. I was then on automatic pilot, making my way home via DLR and tube. Yes, a taxi would have been quicker, but the very thought of getting into a car then made me feel nauseous. I kept my shit together until I got home, but then had yet another seizure in the foyer of my apartment building. I had no idea where I was and had to text @FrankDJS to come down and escort me upstairs.

I then spent about four hours in bed, alternating between sleep and panic, waking up thinking I’d missed my flight. I still have a killer headache and no painkiller ever touches these, so I don’t bother. I’ve sipped tea and water and tried to keep still.

So it’s been a bad day on the epilepsy front. But this time, it’s impacted my work too. There was absolutely no way I could have worked in Dublin today, so mature me knows this and understands I did the best in a bad situation. But I’ve let people down and, despite all their friendly and supportive messages, I feel like I’ve failed.

Fuck you, epilepsy.

Working for yourself is hard enough without you getting in the way and taking me out of action. But… tomorrow is another day. I’ve managed to rearrange my flights – @FrankDJS did this for me while I dozed – and can go to Dublin tomorrow instead.

I should feel like a new man by then, but for now I’m exhausted, disappointed, in pain and in need of even more sleep.

Royal Parks Half – here we go!

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I’m sitting in my kitchen, sipping a coffee and preparing to get dressed. At 0900, I’ll start the Royal Parks half-marathon and run 13 miles / 21km around London’s stunning parks.

All in aid of Epilepsy Action.

Training has gone well and I’ve been very pleased with my longer runs, both in terms of pace and energy. Today’s the day it’s all been leading up to and I have to admit I’m slightly nervous. And excited! I’ve genuinely enjoyed my last few long runs and hope today is as fun.

I’m aiming to finish, injury-free. And I’m aiming to beat my last race time of 2:02. I don’t anticipate smashing my personal best of 1:42, but let’s see how the morning goes!

If you’d like to support my fundraising, you can donate a pound, euro, dollar or any other currency via this link. It all goes towards Epilepsy Action’s great work in education and advocacy for those living this with most common of neurological conditions.

See you on the other side!

Hey brain: why you no work?

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It’s Saturday afternoon and I’ve had three (that I’m aware of) epileptic seizures this week. Maybe more on the horizon. My overwhelming reaction is one of disappointment. Quickly followed by boredom.

I had a couple of nighttime seizures earlier in the week, which left me feeling like I had the mother of all hangovers each following morning. The kind where you can’t bend over to tie your show-laces without searing head-pain and the feeling that your brain is about to pour itself out of your skull via your nostrils. The kind that leaves me fumbling for words and feeling quite spaced out for hours afterwards.

I then had a night of only four hours sleep Thursday night, due to a crappy hotel in Dublin and its proximity to some particularly shady nightclubs. (Top tip: never stay in Harrington Hall on Harcourt Street, unless you like to listen to screams, fights and club music all night).

So, this morning’s absence seizure wasn’t entirely unexpected. I’ve had a busy week and have missed a lot of sleep. The perfect formula for unwanted brain-spasms.

Still, unexpected is one thing. Unwelcome is something else. I slept for about 10 hours last night, but still woke up feeling hollowed out inside. Managed to get as far as Starbucks and back today before I had a passing absence seizure in the hallway of our apartment and took myself off to bed for an hour.

And that was after cancelling my training run this morning. Only a few weeks until the Royal Parks Half-marathon, so I should really be out there, pounding the pavements.

But not today.

(And no, the irony isn’t lost on me – I’m training to run a race to raise money for Epilepsy Action, while my own epilepsy prevents me from training…)

I’m feeling better, but still not myself. I’d actually like to sleep now, but I’m afraid that if I do, I won’t sleep tonight and we’ll be back to square one.

We’re due to go to the cinema this evening and I’m really going to have to see how I feel after dinner before committing. Unless my brain tidies itself up by then, I’m not sure how it’ll cope with a couple of hours of ‘The Magnificent Seven’.

In summary, epilepsy sucks donkey balls. But then we knew that already, right? So I’m really only writing this to make myself feel better about the whole thing, put it into context and move on. I think my epilepsy tends to make me more introspective. Hopefully not self-pitying though. This is where getting the terminology right is key: I live with epilepsy, I don’t suffer from epilepsy.

So, as ever, tomorrow is another day. I’ll chalk this one up to experience, rest up and recharge my batteries. But if epilepsy was my flat-mate, I’d be leaving them a post-it note on the fridge right now.

Next!

Royal Parks Half-marathon: Taking it up a notch

I ran 9km over lunch yesterday, in the wonderful London sun. And despite waking up to glorious sun this morning, it seems to have evaporated and gone elsewhere. Nonetheless, I topped up my (very depleted) caffeine levels and hit the streets.

(As an aside, my running is fuelled by caffeine, not enthusiasm. Running sans cafe is invariably a slow, wheezing misery. I guess it how I’m built).

I managed a very comfortable 15km around the City, only slowed down by the copious volumes of dog shit on the pavements of Shadwell, the gaggles of tourists blocking all the routes around Tower Hill and the people chasing Pokey-men (I know!) all around Old Street roundabout.

Seriously – look where you’re walking! Sigh.

I’d aimed for 15km this morning and was really pleased with my pace (very even throughout) and how I felt afterwards – absolutely brilliant.

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It left me feeling very positive about the Royal Parks half-marathon, even to the stage where I’m pretty confident I can come in under my 2:00 goal. Securing that time, injury-free, would be superb.

And it’s all in aid of Epilepsy Action. If you’d like to donate the price of a coffee to my fundraising efforts, you can do so via this link: https://www.justgiving.com/fundraising/RunningForEpilepsyAction. Every single pound will be much appreciated by me and the nice folks at Epilepsy Action. Snd the good news is that I’m at 71% of my fundraising target of £350!

Big thanks to everyone who has donated so far. If you can’t, please consider sharing this blog post or the fundraising link to raise awareness.

 

On the run…again

We’re roughly two months out from his year’s Royal Park’s Half-marathon and I’m back into training with gusto. I ran almost every morning when in South Beach last month and, while it was far too hot and humid, it was great to get a few kms under my belt. Also a great way to take in South Beach’s spectacular ocean views, so it wasn’t all misery 😉

I completed my longest run in a while this morning: 14km around the city. Left Canary Wharf, headed through Limehouse, across Cable Street, up past Spitalfields, round Old Street roundabout, through Moorgate, down to Bank and across Cable Street and home again.

I had to avoid Wapping and the Highway due to today’s London Triathlon. Barriers and crowds galore!

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It was really enjoyable and I ended up running further than planned due to a combination of the sunshine and the unaccountable spring in my step. Strange, given yesterday’s overindulgences!

Anyway, I’m putting together a training plan to cover the next eight weeks – one that hopefully won’t result in peaking too soon or injuring myself. I have a couple of trips in the calendar between now and then – one to Sitges and one to Jersey. I’m looking forward to getting some runs in on both visits. But I know I need to get the kms in on London’s streets too.

As ever, I’m running to raise money for Epilepsy Action. I live with epilepsy and this charity does great work to dispel myths, provide support to those living with the condition, as well as their families and carers. Every run I complete, I do in the knowledge that so many others with epilepsy just couldn’t.

I’m lucky – I really am.

If you’d like to add to my sponsorship fund, just click here – thanks in advance for every single pound. It’s much appreciated!

Heaving breathing, flashing lights

So I had my sleep-deprived EEG this morning. I fell asleep after about 1am (after staying awake by catching up on the massive backlog of comics I haven’t read) and my alarm went off at 5:30am.

Groan.

I freely admit it was tough to get myself out of bed. Harder still to avoid the coffee machine. I was under strict orders to avoid caffeine before the test. So I woke up at the kitchen table, sipping sparkling water and wishing I was somewhere – anywhere – else.

The test went fine, but was pretty unpleasant. Firstly, you get a load of electrodes glued to your scalp. Then I had to complete a series of exercises, while my brain activity was monitored, including:

  • Hyperventilating, until I got pins and needles in my face and my hands
  • Staring into a strobe light, going against every natural instinct to look away

Ugh. Nothing painful, but unpleasant all the same. I also had to work from my laptop while being monitored, to see the impact a computer screen has on me. I also had to sleep, but – wouldn’t you know it – it took me over an hour to nod off. And then it was in a strange position, so I woke up with an s-shaped neck.

The clinical physiologist that took care of me was brilliant. Very professional,  but also very friendly. We bonded over our shared love of travel while she attached the electrodes to my head.

(A sentence I never in my wildest dreams thought I’d type).

I’m now back at home, shoving coffee into my face and working on staying awake for the next few hours. I’m not sure I’ll manage without a short nap, but I’m determined to catch up on my sleep tonight. Big work day tomorrow.

And now, for your delectation, a selfie of me – complete with electrodes. A valuable lesson in why you should never take a selfie while lying down.

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I’ll get my results in a few weeks, after I get back from South Beach. Fingers crossed for a helpful result. Whatever that is…

Mission impossible

 

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My last EEG test – aren’t those electrodes just the most attractive thing ever?

I’m going into hospital for a sleep-deprived EEG test tomorrow morning. I’ve had a few EEGs on my long journey through the world of epilepsy, including being monitored all night while I slept.

 

Tomorrow, I need to go in having had about half the sleep I normally get.

Oh.

The letter I received recommends going to bed two hours later than usual and getting up too hours earlier than usual. That is, by definition, the worst of both worlds. And to cap it all, I’m not allowed to have any coffee tomorrow until after the tests are complete.

No coffee?!
Tomorrow is going to hit over 30C  in London and I have to brave rush hour public transport short on both sleep and caffeine.

I can tell you one thing: it won’t be pretty.

The sole upside is the possibility of spending a few hours in the afternoon sunshine in our garden by way of recovery. After which I’ll spend far too much time trying to scrape the disgusting electrode glue off my bald head, inevitably leaving some somewhere…

Ironically, my sleep has been pretty good over the last week. Just when I could do with some insomnia, I’m sleeping like a baby.

See you on the other side.

The fragile body

Last weekend, I hit the streets of London hard. Literally. Falling while out running, I took a lump out of my right elbow, badly hurt my right root and knee and (it turns out) twisted my ankle in the process.

This wouldn’t have been so bad – I’m a big boy, after all – except I had to pack for a week-long business trip to Bristol. I then had to haul my suitcase full of clothes and training/coaching materials across London to Paddington Station, deal with crowds, navigate Bristol Temple Meads Station and unpack in the hotel at the other end.

I have to admit, it got me down. It reminded me of how helpless I was after my knee operation a few years back. I had to do quite a few things with just my left arm, as my right elbow was swollen and had a tendency to bleed if bent.

It ached to pick up and put down my backpack. Stairs were a nuisance. Rolling over in bed resulted in flashes of white-hot pain that regularly woke me up through the week.

A week later and I’m in much better shape. My elbow still looks like a wild animal has tried to chew it off, but it’s clean and continues to heal up. Yesterday night’s return journey from Bristol was awkward in that I had to navigate rush-hour crowds with same (slightly lighter) suitcase and backpack as soon as I got off the train in Paddington. Cue lots of people banging into my elbow and knee.

But a nice meal out with @FrankDJS and a spot of comedy on TV improved my mood considerably.

It was weird though. I’m used to some limitations on what I can do, due to epilepsy. Not many, but enough to remind me I’m living with it. But add in a few external injuries and it’s tiresome. Maybe more than tiresome.

During the week, I ended up thinking about what it would be like to live with more limitations on my physical ability, or indeed live with constant pain. (Working with a constant throbbing in my elbow, that painkillers weren’t touching, was tiresome to say the least) wasn’t a happy thought.

But on the flip side, I quickly adapted and was supported by other people as soon as they realised I was slightly and temporarily ‘broken’.

We’re adaptable, us humans. 😜 Attitude and mindset are key!

I’m not going running today, as it’s a pretty busy day (good busy) and I’m not feeling 100%. I might go tomorrow afternoon, after my MRI. Yes, the start of the tests. An MRI tomorrow and a sleep-deprived EEG on Tuesday morning.

All combining to remind me that my body doesn’t work as well as it might.

On the other hand, and in the big scheme of things, it’s relatively minor. I have access to a great neurologist, he’s keen to get to the bottom of my recent epilepsy issues and I have the flexibility and support in my life to get through this.

And the absolutely horrific events in Nice, followed by last night’s attempted coup in Turkey gave me pause for thought.

I’m alive, for god’s sake. I’m not exposed to daily risk of death. I’ve not been attacked, bereaved, deprived of my liberty. I don’t live under the petty whims of a dictator.

Time to suck it up, MacPsych. Your brain occasionally reboots, unexpectedly. Get on with it.

Life’s far too fragile and short for navel-gazing and self-pity.

Better than any medication

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I got to work from Sitges, Spain for a couple of days this week and my overall conclusion from the whole experience is that giving me access to unlimited sunshine is better for me than any meds I’ve been prescribed by a doctor!

Despite it being a work trip, I managed to get some time on the beach next to the hotel – Platja dels Balmins – and the combination of sunshine on my skin and time spent jumping through waves in the sea was like flicking a switch in the brain. All thoughts about my epilepsy disappeared, along with the residual self-pity. It was like a positive jolt of energy and enthusiasm.

Fantastic.

The beach, while small, is just lovely. Sheltered from the wind and prying eyes, it’s ‘clothing optional’. And as we all know, I got over my self-consciousness about getting ‘desnudo‘ in public in Japan a couple of years ago when I visited the onsen. Nudity is the great social leveller. It leaves you with no idea as to what someone does for a living, where they’re from or any other social cues our clothing sends out. And, let’s be honest, it is also from time to time absolutely hilarious.

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No thumping music and nobody smoking. A couple of cafes within steps of my lounger. Nobody trying to sell cheap tourist tat. My kind of beach.

Total relaxation. I didn’t put earphones in my ears once, and left my phone in my beach bag. It was just me with my thoughts and the sounds all around me.

I’m convinced that putting me out in the sunshine for a few hours at a time has done more for my mental health and attitude than any other intervention I’ve tried this year.

Bring on the various neurology tests – I’m just looking forward to another trip to Sitges and time spent lying naked on the beach and floating in the sea. Maybe I’ll reward myself with a weekend there in August once all the tests are over.